Old 04-11-2017, 08:23 PM #1
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Default My life is being stolen

You know, I thought it was hard enough finding out that I had Rheumatoid Arthritis a year and a half ago. It was hard to wrap my head around all the pills that I needed to take just to slow the disease and manage the pain. It was hard to give myself weekly injections. It is hard to continue to work on any kind of regular basis because flares prevent me from driving. And because of constant doctor's appointments and blood tests. I have no sick time left. I've used vacation accumulation to supplement my income. I work on what were once 'days off'. It was hard to watch nodules appear on my hands and feet. It was hard to give up high heels. It was hard to explain to other people. And it was hard to explain to my Rheumatologist that it wasn't just my joints that hurt. I hurt everywhere all the time. Every time I saw him, he would ask how long it took for the stiffness to go away in the morning. And every time I would reply that whatever pain I felt in the morning was what I could expect to feel all day. If I was lucky, it wouldn't get any worse as the day went on.

Finally, last week, he heard me. Because I broke down in his office. And he spent two and a half hours asking questions and doing a physical exam. His diagnosis: Fibromyalgia. So now, I am taking Duloxetine along with my RA meds. And Tramadol.

How do you all do this? How do you have lives? Because I don't, it seems. These diseases are stealing my life from me. I work or I'm sick. I try to keep up with housework but I am so, so tired all of the time. I have heard that low-impact yoga, aqua therapy and other mild exercises are helpful but when am I supposed to do any of these things? Time and energy for more than what I am doing now is non-existent.

Is there anyone out there who is single, living alone who can give me some advice?
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Old 04-12-2017, 01:06 PM #2
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Default Re: My life is being stolen

Hi,
I am single but I don't live alone (2 kids special needs boy age 21 more like a 6 yr old and 10 yr old girl) I do sometimes feel like Im on my own though so I can relate to how your feeling, I really hope you get support and help you need from people on this site so you know your not alone.
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Old 04-12-2017, 03:23 PM #3
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Default Re: My life is being stolen

Oh anna42, my heart goes out to you. I find it a struggle just to look after myself. I can't imagine how hard it must be to try to look after anyone else on top of that.
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Old 04-12-2017, 03:24 PM #4
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Default Re: My life is being stolen

Hi Livingalone i too live alone but i cant work fibro has really got hold of me in the last few years and i am pretty much house bound...doing my chores is hard enough and minimal.

I dont have RA but i do have bad pain all over every day and walking is very hard even around the house...many people on here are doing much better than me and i hope you get the help you need..lots of good advice on here...pacing is very important..you have to find a new way of living and doing resting in between.

Everyone is at different level..some people still work drive and do shopping and socialize...some are in between and just a few are stuck at home all the time....and for many they still find a way to live a good life albeit a different life.

Please stay here and ask anything you want.
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Old 04-12-2017, 04:28 PM #5
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Default Re: My life is being stolen

Hi Willow. And thank you. This is the first support group I've joined. Figured after a year and a half of trying to deal with this on my own, it was time to start finding other people who could relate to what I'm going through.

Honestly, I'm scared to death of what the future is going to hold for me. How much joy can there be in a life wracked in pain? I don't feel like I'm actually living anymore. I'm surviving....that's it.
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Old 04-13-2017, 08:24 AM #6
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Default Re: My life is being stolen

Hi,

I suppose I should start by saying that you are not alone. That is always something to keep at the back of your mind because the struggle of chronic illness can be such a lonely experience.

My story is not something that will lift you up, but it still is proof that life goes on one way or the other.

My 20s were lost to mental illness. But the beginning of my 30s were amazing. Great job, a place of my own, great friends, being social, being out there, going on dates, being active, traveling the world etc. But after 4 years of 'normal happy life', I switched jobs, a job that was supposed to be my dream job, and everything started falling apart. The job turned out to be a nightmare. So bad it left me with PTSD. All my mental health issues started 'waking up' again. Then finally my body started to give up, piece by piece.

I had to leave my office job knowing I could never have one again. Maybe part-time, but there are no part-time jobs where I live. I freelanced for about 3 years, making just enough to pay the basics. But 5 months ago I had to stop. I am a linguist and was working as a freelance translator, but I started to have serious problems with concentration, word choice, grammar - stuff I specialize in!

Now I am living with my mom and sister. I have to because I have no other choice. There are no benefits/disability payments in the country that I live in. It is very hard being almost 40 and being dependent on family members for the basics. I try to chip in as much as I can money-wise (it is therefore so important to save money whenever however you can!) But I also feel so guilty about being dependent that I try to do all the cleaning, laundry and cooking in the house. Well, I try to.

For me, besides the hardship of chronic physical illness and mental illness, it is also a huge grieving process. Grieving for the things I had and lost. But also for the things that I always wanted, but were never given a chance to have, now even more than ever thanks to my worsening health. So sure, I cry often, and feel very sad. But then I remind myself that being sad does not help anyone. It does not help my physical well-being or my mental state, so I do everything to distract myself.

So distraction is key. Keeping busy one way or the other. Finding new hobbies, finding new passions in life. It is also important to move and treat your body well. I love spending time in nature. Walking if possible, but also just sitting down and looking around me. Whenever I am with animals, I also the happiest person on the planet, so I try to do that as much as possible as well.
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Old 04-13-2017, 10:59 AM #7
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Default Re: My life is being stolen

Hi again Livingalone...if the pain is now getting so bad try the meds youve been given..give them a chance..but if no joy there are others..what works for one does not work for all.....it is hard to keep your spirits up..i know its such a shock....is there a support group anywhere near you for Fibro. CFS or M E where you might meet some others in your situation.

Also is there any other career that would be less taxing..i'm sure you have wracked your brains..or downsizing to cheaper apartment and sometimes giving up somethings we think are essential we can do with out more than we think.....these are all horrible choices and are minds rebel about lowering our standards or income...its bad enough just the pain and illness without loosing our lifestyle and fighting to keep our home.

lol..you need a sugar daddy now to take care of you..only joking..i'm sure like so many of us with fibro you have been a hard working independent lady and this makes it even harder to adjust...i feel for you...i cried a lot in private when i first got fibro and used to wake up every day in shock and confused at what was happening..watch all my friends and family enjoying things like i was in my own bubble...even when i went out for family meals at restaurants sitting on the hard chair hurt so much as did cutting up my food...and they all carried on of course and i remeber thinking how on earth can i live like this!

You and i are similar age ...i have 1 grown up son..i once had a great career ....please feel free to pm message me if you would like..no pressure just an offer if you would like to chat off the forum.
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Old 04-14-2017, 12:35 AM #8
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Default Re: My life is being stolen

Hi LivingAlone,
Welcome to the forum. There is alot of helpful advice from others who have had this condition far longer than me. I did find water areobics helpful as well as yoga. Unfortunately I developed a flare up and had to give both away for a time. My advice is don't be too hard on yourself. Yes this diease is debilitating and frustrating and causes us to feel depressed and pissed off with ourselves and the world. I have been diagnosed for over a year now and so can relate very easíly to being told you have fibromyagia. More than anything you want to turn the hands back in time and never hear it but you can't. What I have learnt is acceptance, patience and persistence. Acceptance of where I am in my life and body, patience that somedays are better than others and persistence in not giving up on exercise, doing it when I am having a better day than normal. It may only be a 15min walk around the block or half an easy yoga CD but I am doing it and it's better than not. Moving forward bit by bit is key no matter how slow or at what level, look at what you have achieved not where you have come from. One day at a time and remember to praise and applaude yourself for what you have achieved in that day. All the best in your journey with this conditíon.Xx
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Old 04-20-2017, 05:41 AM #9
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Default Re: My life is being stolen

I'm 48. Worked all my life. Paid the mortgage off. Bought a retirement place. Have struggled all my life with all the different ailments that go along with fm. I got so bad that I was home bound if not at work. After a couple of years being extremely depressed Ive decided to give it all I can and if it doesn't work out I still have my family with a wonderful grandson who I spoil every chance I get. I've been on and off short term disability over the years due to different ailments that I now know was fm. I know that sooner or later I will need to file for ssd. hope this helps. This chronic illness took a lot from me but also taught me what really is most important in my life.
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Old 04-21-2017, 08:56 AM #10
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Default Re: My life is being stolen

Hi Living Alone,
Welcome tup the forum, i hope we can be as helpful and supportive to you as this place was for me months ago when i found it. I have fibro and have not (at this point) been diagnosed with RA, but I'm waiting for it. My mom had RA and lupus, so I watched her go through years of pain. I have always been active and independent, so I'm also trying to accept and adjust to my new limits to be able to still enjoy life. I have several mental games on my phone now to occupy and use my mind when I hurt too much to move around much. You just have to do the best you can and doing push yourself too hard in finding what works for you. Amy question you have, feel free to ask and hopefully we can all help each other enjoy life a little more.
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Old 04-21-2017, 10:02 AM #11
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Default Re: My life is being stolen

Hi Livingalone,
I am also single and I do not live with any other people. I live outside of town by about 20 miles and am solely responsible for my house, my property, and my animals. Since my partner died 4 years ago and my closest friend vanished 3 years ago I have had no one to help me with anything or, for that matter, even to talk to. I don't have anyone to go do things with me so I don't do a whole lot, although I wouldn't be able to do much anyway because just doing what I have to do is exhausting. I still work, although I am self employed and keep it down to 3 days a week.

I have been asked how I do it....take care of 4 animals and the house and work and do it alone when I am in chronic pain and exhaustion. Well, I do it because I have literally no choice. If I don't feed the animals they will go hungry. If I don't make money and pay the bills we will not have electricity or water. If I don't cook healthy meals for myself, I will feel worse. So I just do it. sometimes I can only do a little and then lie down, do a little more, and then lie down.

It stinks, because I have always been a person of very abundant energy and to be so tired is actually worse for me than the pain. And I don't keep my house spotless the way I used to; sometimes I don't vacuum for days, and unfortunately that ends up contributing to my depression, which I also have in abundance. Then, because I am depressed, I don't get anything done and the house gets worse. Vicious circle. sometimes I go through a week or so when nothing gets done at all except to feed the animals. But then I drag myself around and make myself clean. Again, I have to. I don't have anyone else, so there's no choice.

I don't know what to tell you about how I do it. Except to say that when there is no choice in the matter, you can find stores of strength inside you that may surprise you. I think that inside me I am a very strong person, with a strong will and a lot of perseverance. Even if I have to give up for a while,I will always go back to putting one foot in front of the other. I read a lot and I watch movies. My evenings I spend relaxing and reading or watching a movie at home and that is my treat to myself for getting through the day. I find ways to distract myself from things and I try to give myself credit for what I managed to accomplish in the day, even if it was only a small thing.

My life doesn't have much joy in it, and I am lonely. But just by the fact that I have a house to live in and food to eat every day and shoes on my feet and a car and enough money to feed animals, that puts me into the top 7% of the richest people on this planet. Literally. You can look it up. 93% of human beings have less than that. Millions of people will never in their lifetime have a clean glass of ice water to drink. And so I never forget that, while I have problems, and I don't think it is right to compare one person's problems with another's, I am still very fortunate. At least I don't have all these physical and mental health problems AND am living on the street with nothing to my name.
Not that that really helps materially, but it is something to remember.
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